United in stunned disbelief: A blog rec

I’ve kinda been all over the place lately.  I spent my first 3 nights away from N this past weekend.  I had to go out and start attending to my dad’s house.  (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.)  All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November.  The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled.  Dealing with orphanhood has also been weighing me down.  Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due…  I digress.  But, finally, my health has also been a constant elephant in the room.  I’m in pain a lot these days.  Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much.  Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain.  Next week’s rheumatologist appointment can’t come soon enough.

But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field.  To put it simply, I’ve been failed just so many times.  And the cause hasn’t really mattered.  What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me.  The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.”  The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain.  The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying.  The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!”  The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility).  The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function.  The common thread is the sheer WTF-ness of it all.

And, I’m not alone.  That’s why I was happy to stumble upon the new blog You Need a New Doctor.  There’s a few things that sharing these truly horrifying stories can do.  They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone.  They give us a chance to laugh (or cry) along with a community of fellow-travelers.  They shame a system that has repeatedly failed us.  They inspire us to help make the system change.  They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden.  We can do better.

So, please check it out.  And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?

6 thoughts on “United in stunned disbelief: A blog rec

  1. Your jar story struck a chord. I did collect my third miscarriage’s “product of conception” in a jar for testing and then the doctor had the lab look at it under a microscope but NOT TEST THE DNA AND THEN THEY DISCARDED THE TISSUE. I’ll write that story for Jen’s blog some day too, but I already submitted a different story last week. How is it that we have so many stories! :(

    Good luck with your next healthcare battles – I hope you get to feeling better soon.

    • I’m so sorry. Another IF friend has an equally staggering story of wandering the halls of a hospital on a holiday with a tupperware of her products, begging someone to test them. She’s how I knew to ask for the jar, sadly. Why do we have to face so many of the same battles over and over again?

      There really are too many to pick from, aren’t there? And therein lies the problem.

      Thanks.

  2. I just want to tell you that it is so helpful to read about your frustrations with the health care system. I think that may be the hardest part of the last 5 years of infertility and loss for me. It certainly has been the biggest frustration. I have begged, cried, screamed and hated myself for being “that person” on the phone, when people have done negligent things that could cost me my hard fought and unbelievably expensive pregnancies (5th miscarriage and counting – and no living children!) In fact, I’ll never know if this latest loss is due to negligence, no way to prove it, and it haunts me. It could make me go crazy if I let it. I always wonder what these same careless/unmoved/unapologetic people would do or feel if it was them? Their money? Their baby? Their life? So please, keep complaining here, being raw, not shielding us from the truth, the ugliness, the pain. And don’t feel bad if you post once a year – that’s good. Finally, I’m so sorry for all of your losses and struggles. You have certainly been through and are still going through, a great deal. Sending you comfort, as your words comfort me.

  3. My RE wanted me to wait from a Monday to Friday for a D&C because he was “too busy” to do it sooner. He didn’t tell me because he was “too busy” so he kept sending in his heavily pregnant nurse. I went to an OB office and got my D&C that day where the OB complained that I was still awake considering the drugs he gave me and he gave the jar to my husband because he said it was too late for the couriers to bring it to the lab. I thought he said I could go so I got up and got dressed and left making eye contact with the receptionist on the way out. DH wasn’t in the waiting room so I went out of the building (high on the stuff his gave me so I should have been STOPPED but nope) and found DH we went to the hospital basement alone looking in doors until we found the lab and found someone to deliver the jars to ourselves. I realized when the drugs wore off that I probably wasn’t supposed to just walk out. I called the OB office and they had an attitude with ME about it when I said maybe someone should have stopped me then. Then the RE didn’t want to see me at his practice anymore because I “sought treatment elsewhere” and didn’t acknowledge my version of the events where he DENIED to treat me in a timely fashion after I did 3 IVFs at his office. Some of these MDs need to get a clue. We are people and we deserve respect not this crap when we are in the middle of losing a very longed for baby.

  4. With those symptoms, have you been checked for Lyme disease? And if so, what kind of test and through which lab? Unfortunately, there are a lot of problems with standard Lyme tests that doctors aren’t even aware of, because most are so misinformed about Lyme. The ELISA test, which is an antibody test, has a high rate of false negatives for a lot of reasons, and then if you get the Western Blot (which they often only run if the ELISA is positive), you need a lab that reports all the reactive bands, because you really need to look at which bands are positive rather than the way they label the results as a whole – just “positive” or “negative” – because that’s often an incorrect interpretation.

    I know that sounds super complicated, and I wish for everyone’s sake, it was as easy as just getting one blood test, because so many people spend years looking for the right diagnosis, or are misdiagnosed. I have Hashi’s myself (we’ve talked before via FF and FB), along with adrenal issues, and I’ve only recently found out that Lyme was a big missing piece of the puzzle for me. It really explains a lot – pretty much any unexplained symptom I’ve ever had. And I’m not an outdoorsy person at all; you really don’t have to be with how common Lyme actually is nowadays. It’s a hidden epidemic.

    Just thought I’d mention it as something to look into in case it helps. There’s a good symptom checklist here:

    http://www.cangetbetter.com/symptom-list

    …and for further info, check out the ILADS.org website. I can also recommend a great documentary that’s free on Hulu.

    I’m not sure if it shows you my email, but if it does, feel free to email me if you’d like to talk more.

    I’m so sorry about your dad, by the way. I don’t know if I ever commented on your other posts here or on FB, but I always read them. Yours is the only pregnant-after-IF blog I can follow, because I feel like I would have similar thoughts in your situation (it’s nice to see someone who doesn’t have IF amnesia the second they have a baby) and, as someone with many chronic illnesses, I can always relate to the Hashi’s struggles and stupid doctors and such. I just found this post again because I thought of you all of a sudden and wondered if you’d written anything new. I miss your posts! (Not trying to pressure you to start writing again; just wanted you to know in case I never said it that I always enjoyed your blog.)

    Hope you’re doing well lately, or better at least.

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